scholarly journals Online survey to assess parents’ experience and preferences for follow-up visits for children living with type 1 diabetes in Quebec, Canada: a study protocol

BMJ Open ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. e031185
Author(s):  
Maude Laberge ◽  
Malek Badreddine ◽  
Monia Rekik
Keyword(s):  
Social Media ◽  
Type 1 Diabetes ◽  
Online Survey ◽  
Patient Survey ◽  
Ethics Committee ◽  
Need For Care ◽  
Follow Up Care ◽  
French And English

IntroductionIt is accepted that although patients may initiate a visit to a healthcare provider, follow-up visits are often based on recommendations from providers. This suggests that follow-up care, since not initiated by patients, may not reflect patients’ perception of a need for care. However, few studies have examined the burden of regular follow-up care and patients’ perceived value of such care. For parents of children with type 1 diabetes (T1D), follow-up visits are scheduled regardless of how well controlled the diabetes is. Our study examines how benefits and burden from the parents’ perspective could affect their preferences in regard to the frequency of regular follow-up care.MethodsWe aim to develop an online patient survey to be distributed to parents of children living with T1D in the province of Quebec, Canada. The survey will be available in French and English, and distributed through diabetes clinics, on social media groups and forums for parents of children with T1D. The survey will be developed in collaboration with parents of children with T1D to ensure that it appropriately reflects the services in regular follow-up care and that the language is understandable and clear.Ethics and disseminationAll participants will be informed of the requirements and objectives of the survey at the beginning of the questionnaire and that the data collected will remain anonymous and confidential. Ethics approval for the study was obtained from the research ethics committee of the CHU de Québec-Université Laval. Results of the study will be shared with relevant stakeholders with the aim of improving practices and better meeting patients’ and families’ needs.

A long-term evaluation of Facebook for recruitment and retention in the ENDIA type 1 diabetes pregnancy-birth cohort study (Preprint)

2021 ◽  
Author(s):  
Kelly J McGorm ◽  
James David Brown ◽  
Rebecca Louise Thomson ◽  
Helena Oakey ◽  
Belinda Moore ◽  
...  
Keyword(s):  
Social Media ◽  
Type 1 Diabetes ◽  
Logistic Regression ◽  
Birth Cohort ◽  
Multinomial Logistic Regression ◽  
Sociodemographic Characteristics ◽  
Recruitment And Retention

BACKGROUND Recruitment and retention of research participants is challenging. Social media, particularly Facebook, has emerged as a tool for connecting with participants due to its high uptake in the community. The Environmental Determinants of Islet Autoimmunity (ENDIA) study is an Australia-wide prospective pregnancy-birth cohort following children who have a first-degree relative with type 1 diabetes (ACTRN1261300794707). A dedicated Facebook page was established for the ENDIA study in 2013 with the aim to enhance recruitment and support participant retention. OBJECTIVE The purpose of this investigation was to evaluate the long-term impact of Facebook as a recruitment and retention tool. The hypotheses were that (1) Facebook was an important source of referral to the ENDIA study, (2) the sociodemographic characteristics of participants recruited by Facebook would be different from those of participants recruited by other means (i.e., ‘conventional recruits’), and (3) recruitment by Facebook would be associated with long-term retention. We also evaluated the most effective types of Facebook content based on post engagement. METHODS Recruitment of 1511 ENDIA participants was completed in December 2019. Characteristics of participants recruited through Facebook were compared to conventional recruits using linear, logistic, and multinomial logistic regression models. A logistic regression model was used to determine the risk of study withdrawal. Data pertaining to 794 Facebook posts over 7.5 years from June 2013 until December 2020 were extracted using the Facebook ‘Insights’ function for thematic analysis. RESULTS Facebook was the third largest source of referral to the ENDIA study (300/1511; 19.9%) behind in-person clinics (500/1511, 33.1%) and healthcare professional referrals (347/1511, 23.0%). The ENDIA Facebook page had 2337 followers at the close of recruitment. Approximately 20% of these could be identified as participating parents. Facebook recruits were more frequently Australian-born (P<.001) enrolling postnatally (P=.01) and withdrew from the study at a significantly lower rate compared to conventional recruits (4.7% vs 12.3%; P<.001) after a median of follow-up of 3.3 years. CONCLUSIONS Facebook was a valuable recruitment tool for the ENDIA study and participants recruited through Facebook were three times less likely to withdraw during long-term follow-up. The sociodemographic characteristics of Facebook recruits were different to conventional recruits, but perhaps in unintended ways. Facebook content featuring stories and images of participants received the highest engagement despite the fact that most Facebook followers were not enrolled in the study. These findings should inform social media strategies for future cohort studies involving pregnant women and young families, and for type 1 diabetes risk studies. CLINICALTRIAL Australia New Zealand Clinical Trials Registry: ACTRN1261300794707 INTERNATIONAL REGISTERED REPORT RR2-https://doi.org/10.1186/1471-2431-13-124

scholarly journals Clinical Trial Recruitment and Retention of College Students with Type 1 Diabetes via Social Media: An Implementation Case Study

2019 ◽  
Vol 13 (3) ◽  
pp. 445-456 ◽  
Author(s):  
Lauren E. Wisk ◽  
Eliza B. Nelson ◽  
Kara M. Magane ◽  
Elissa R. Weitzman
Keyword(s):  
College Students ◽  
Social Media ◽  
Type 1 Diabetes ◽  
Decision Rules ◽  
Health Related ◽  
Social Media Platforms ◽  
Trial Implementation

Background: We sought to quantify the efficiency and acceptability of Internet-based recruitment for engaging an especially hard-to-reach cohort (college-students with type 1 diabetes, T1D) and to describe the approach used for implementing a health-related trial entirely online using off-the-shelf tools inclusive of participant safety and validity concerns. Method: We recruited youth (ages 17-25 years) with T1D via a variety of social media platforms and other outreach channels. We quantified response rate and participant characteristics across channels with engagement metrics tracked via Google Analytics and participant survey data. We developed decision rules to identify invalid (duplicative/false) records (N = 89) and compared them to valid cases (N = 138). Results: Facebook was the highest yield recruitment source; demographics differed by platform. Invalid records were prevalent; invalid records were more likely to be recruited from Twitter or Instagram and differed from valid cases across most demographics. Valid cases closely resembled characteristics obtained from Google Analytics and from prior data on platform user-base. Retention was high, with complete follow-up for 88.4%. There were no safety concerns and participants reported high acceptability for future recruitment via social media. Conclusions: We demonstrate that recruitment of college students with T1D into a longitudinal intervention trial via social media is feasible, efficient, acceptable, and yields a sample representative of the user-base from which they were drawn. Given observed differences in characteristics across recruitment channels, recruiting across multiple platforms is recommended to optimize sample diversity. Trial implementation, engagement tracking, and retention are feasible with off-the-shelf tools using preexisting platforms.

Saving families time and money: a new model using telemedicine of follow-up care for children with type 1 diabetes

2009 ◽  
Vol 33 (3) ◽  
pp. 309-310
Author(s):  
D. Pacaud ◽  
G. Currie ◽  
S. Crawford ◽  
T. Schweitzer ◽  
M. Chiasson
Keyword(s):  
Type 1 Diabetes ◽  
New Model ◽  
Follow Up Care

scholarly journals Parents’ preferences for follow-up care in a type 1 diabetes paediatric population: a survey-based study in Quebec, Canada

BMJ Open ◽  
2021 ◽  
Vol 11 (11) ◽  
pp. e046757
Author(s):  
Maude Laberge ◽  
Monia Rekik ◽  
Kodjo Mawuegnigan Djiffa
Keyword(s):  
Type 1 Diabetes ◽  
Clinical Guidelines ◽  
Primary Outcome ◽  
Probit Model ◽  
Standard Of Care ◽  
Paediatric Population ◽  
Follow Up Care ◽  
Intensity Of Care

ObjectivesExamine variations in parent’s preferences for their child’s type 1 diabetes (T1D) follow-up care and the determinants of the preferred intensity of care. Clinical guidelines recommend multidisciplinary management of T1D, with follow-up visits with an endocrinologist at least every 3 months in the paediatric population. However, there could be heterogeneity in parents’ needs, and preferences in terms of care management may deviate from clinical guidelines.SettingNot applicable.ParticipantsParents who have a child living with T1D and who reside in Quebec, Canada.InterventionIn collaboration with a patient-partner (a parent of a child with T1D), we developed a survey to collect data from parents of children living with T1D. Our primary outcome of interest was the preferred time in months between two appointments. We ran a probit model to analyse longer time (over 3 months between appointments), compared with the standard of care (3 months or less).ResultsResults suggest that about one-third (33%) of parents want to deviate from the guideline. Parents who want to increase the time between appointments are more experienced in the management of the disease and have higher costs than those who wish to follow the 3-month guideline. The number of years since the diagnosis is positively associated with a preference for a longer time between appointments, while the perceived useful of information provided during the consultation, and a parent having made a change in their professional life were negatively associated with a desire to space out appointments. The child’s gender is not a significant factor in parents’ preferences.ConclusionsAdapting visit protocols could make the health system more efficient to respond to T1D patients and their parent’s needs.

Independent Association of a Metabolic Syndrome Severity Score with All-Cause Mortality in Type 1 Diabetes—A 10-Year Follow-Up

Diabetes ◽  
2018 ◽  
Vol 67 (Supplement 1) ◽  
pp. 618-P
Author(s):  
GIUSEPPE PENNO ◽  
MONIA GAROFOLO ◽  
ROSA GIANNARELLI ◽  
FABRIZIO CAMPI ◽  
DANIELA LUCCHESI ◽  
...  
Keyword(s):  
Metabolic Syndrome ◽  
Type 1 Diabetes ◽  
Severity Score ◽  
All Cause Mortality ◽  
Independent Association

Estimated Glucose Disposal Rate as a Predictor of All-Cause Mortality in Type 1 Diabetes—A 10-Year Follow-Up Study

Diabetes ◽  
2018 ◽  
Vol 67 (Supplement 1) ◽  
pp. 1694-P
Author(s):  
MONIA GAROFOLO ◽  
ALESSANDRA BERTOLOTTO ◽  
FABRIZIO CAMPI ◽  
DANIELA LUCCHESI ◽  
LAURA GIUSTI ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Glucose Disposal ◽  
Follow Up Study ◽  
All Cause Mortality ◽  
Estimated Glucose Disposal Rate ◽  
Glucose Disposal Rate

322-OR: Risk Factors for Peripheral and Cardiovascular Autonomic Neuropathy in Type 1 Diabetes: Thirty Years of Follow-Up in DCCT/EDIC

Diabetes ◽  
2019 ◽  
Vol 68 (Supplement 1) ◽  
pp. 322-OR
Author(s):  
BARBARA BRAFFETT ◽  
ROSE GUBITOSI-KLUG ◽  
JAMES W. ALBERS ◽  
EVA L. FELDMAN ◽  
CATHERINE MARTIN ◽  
...  
Keyword(s):  
Risk Factors ◽  
Type 1 Diabetes ◽  
Autonomic Neuropathy ◽  
Cardiovascular Autonomic Neuropathy

A Decade of Disparities in Diabetes Technology Use and HbA1c in Pediatric Type 1 Diabetes: A Trans-Atlantic Comparison

2020 ◽  
Author(s):  
Ananta Addala ◽  
Marie Auzanneau ◽  
Kellee Miller ◽  
Werner Maier ◽  
Nicole Foster ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Technology Use ◽  
Hemoglobin A1c ◽  
Diabetes Technology ◽  
Design And Methods ◽  
Relationship Of ◽  
The Relationship ◽  
Pediatric Type 1 Diabetes

<b>Objective:</b> As diabetes technology use in youth increases worldwide, inequalities in access may exacerbate disparities in hemoglobin A1c (HbA1c). We hypothesized an increasing gap in diabetes technology use by socioeconomic status (SES) would be associated with increased HbA1c disparities. <p> </p> <p><b>Research Design and Methods: </b>Participants aged <18 years with diabetes duration ≥1 year in the Type 1 Diabetes Exchange (T1DX, US, n=16,457) and Diabetes Prospective Follow-up (DPV, Germany, n=39,836) registries were categorized into lowest (Q1) to highest (Q5) SES quintiles. Multiple regression analyses compared the relationship of SES quintiles with diabetes technology use and HbA1c from 2010-2012 and 2016-2018. </p> <p> </p> <p><b>Results: </b>HbA1c was higher in participants with lower SES (in 2010-2012 & 2016-2018, respectively: 8.0% & 7.8% in Q1 and 7.6% & 7.5% in Q5 for DPV; and 9.0% & 9.3% in Q1 and 7.8% & 8.0% in Q5 for T1DX). For DPV, the association between SES and HbA1c did not change between the two time periods, whereas for T1DX, disparities in HbA1c by SES increased significantly (p<0.001). After adjusting for technology use, results for DPV did not change whereas the increase in T1DX was no longer significant.</p> <p> </p> <p><b>Conclusions: </b>Although causal conclusions cannot be drawn, diabetes technology use is lowest and HbA1c is highest in those of the lowest SES quintile in the T1DX and this difference for HbA1c broadened in the last decade. Associations of SES with technology use and HbA1c were weaker in the DPV registry. </p>

Sign in / Sign up

Export Citation Format

Share Document